Individuals’ human rights were potentially breached in more than 500 cases where do not attempt cardiopulmonary resuscitation (DNACPR) decisions were made during the coronavirus pandemic, the care regulator has said.

The Care Quality Commission (CQC) has called for ministerial involvement to tackle the “worrying variation” in people’s experiences of DNACPR decisions, with some families not properly involved and others unaware that decisions had been made.

It said that a combination of “unprecedented pressure” on providers and “rapidly developing guidance” may have led to situations where DNACPR decisions were incorrectly conflated with other clinical assessments.

It is vital we get this right and ensure better end-of-life care as a whole health and social care system, with health and social care providers, local government and the voluntary sector working together

There were examples of good practice but the regulator also found a “worrying picture” of poor involvement of people using services, poor record keeping, and a lack of oversight and scrutiny of the decisions being made.

But it noted that the issues raised – such as the need for proper, consistent processes around timely conversations about people’s care – pre-dated the pandemic.

The CQC was asked by the Department of Health and Social Care to conduct a rapid review of how DNACPR decisions were used at the start of the coronavirus pandemic.

It followed concerns that decisions were being made without the involvement of patients or relatives, and that they were being applied in a blanket way to particular groups, for example people with learning disabilities.

The CQC produced an interim report in December which found that doctors may have made blanket decisions without the input of patients or their families during the first wave of the pandemic.

The latest report includes evidence from seven Clinical Commissioning Groups (CCGs), responses from adult social care providers, a public survey and voluntary sector organisations.

Some 2,048 adult social care providers responded to the CQC, and said that 508 DNACPR decisions made since March 17 2020 had not been agreed in discussion with the person, their relative or carer.

Around a third (180) were still in place in December.

And, while responsibility for making DNACPR decisions does not largely rest with adult social care providers, 119 providers said people in their care had been subject to blanket DNACPR decisions since March 2020.

The CQC said the figures raised concerns about whether the providers making these decisions were at risk of breaching the Equality Act 2010.

Most providers of adult social care, and primary and secondary care, said they were not aware of inappropriate DNACPR decisions.

But other stakeholders, service users, families and carers said blanket DNACPR decisions had been proposed locally.

The regulator heard evidence that these decisions were “quickly challenged and retracted”.

The treatment we would like or not if we become desperately ill or if our heart stops beating is one of the most important decisions any of us will ever make, so it's extremely disturbing that this report effectively stands up the notion that some older people's rights to choose were ridden roughshod over

One person told the CQC: “I only found out about the (DNACPR) when they were discharged from hospital; no-one had mentioned it to me before nor to the person concerned. It was a tremendous shock.”

Another said: “I felt pressured to accept the decision of the doctors as they illustrated a terrible picture (i.e. immense suffering of the person) if I did not.”

It is calling for a Ministerial Oversight Group to work with health and care providers, local government and the voluntary sector to deliver improvements.

It wants to see a consistent national approach to advance care planning, with staff training, accessible information for families and records of conversations and decisions agreed.

Rosie Benneyworth, chief inspector of Primary Medical Services and Integrated Care at the CQC, said: “It is vital we get this right and ensure better end-of-life care as a whole health and social care system, with health and social care providers, local government and the voluntary sector working together.

“Covid-19 has brought this to the fore but these are not new issues.”

Age UK said the approach to advance care planning needed a “complete overhaul”, with strengthened support for professionals and families with concerns.

It was also calling for a review so that any “hasty, ill-informed decisions” could be removed from older people’s records.

It is unacceptable that assumptions are made about people’s quality of life or their wishes in relation to treatment. They deserve and have a right to so much better

Charity director Caroline Abrahams said: “The treatment we would like or not if we become desperately ill or if our heart stops beating is one of the most important decisions any of us will ever make, so it’s extremely disturbing that this report effectively stands up the notion that some older people’s rights to choose were ridden roughshod over during the pandemic.

“It is doubly concerning that the CQC says these problems were not unique to the pandemic but were happening to a degree before it even arrived.”

Dan Scorer, head of policy at the learning disability charity Mencap, said: “CQC’s important review into use of DNACPRs during the pandemic highlights the urgent need for better staff training and support to ensure the right of people with a learning disability, and their families, to be involved in decisions about care and treatment is upheld.

“It is unacceptable that assumptions are made about people’s quality of life or their wishes in relation to treatment. They deserve and have a right to so much better.”

An NHS spokesman said: “The NHS has repeatedly instructed local clinicians and services that the blanket DNA(CPR) decisions would be unacceptable – including on three separate occasions in less than a month at the start of the pandemic, and again last week – and that access to treatment and care for people should be and is made on an individual basis in consultation with family and carers.”

A DHSC spokesperson said: “It is totally unacceptable for ‘Do Not Attempt CPR’ orders to be applied in any kind of blanket fashion – this has never been policy and we have taken decisive action to prevent it from happening, working closely with the health and care sector to make this clear and asking the CQC to undertake this review.

“We support the recommendations in this report and we are determined to ensure everyone receives the compassionate care they deserve in all settings.”